Exactly one week after I was admitted, one of my biggest fears came true. I had sepsis.
This was an absolute nightmare. The medical team put me on IV antibiotics immediately. Thinking that the infection likely came from the port, they also put it directly through the port. After the antibiotics were given, the day-shift nurse de-accessed my port, and when she tried to re-access it, there was no blood return. Different nurses, students, and residents came into the room and poked and poked me in an attempt to re-access it successfully. Their attempts failed, and I was told that the port had clotted. At this point, the interventional radiology (IR) consensus was that it was necessary to remove the port.
Given the fever, pain, high doses of ketamine, and a cocktail of other drugs, I have fragmented memories from these weeks in the hospital. I honestly don’t think I comprehended a lot of what was going on during this time. However, I do remember some of the port removal.
The fluorescent lights made my head throb while I was lying on a hard table frantic and worried that a procedure was about to ensue without anesthesia. Sobbing and incredibly anxious, I repeatedly begged for anesthesia, Propofol, Ambien, anything to knock me out so I wouldn’t have to bear the emotional trauma of being awake for what was about to happen. A tall man in a blue mask leaned over me and injected my port site five times with lidocaine. Then, the procedure began. I’ll spare you the details.
To this day, I have flashbacks to this port removal. In light of all the surgeries and procedures I have been through, this was definitely not a big one, but it was traumatic. Port removals are fairly common procedures that are usually done under conscious sedation. However, a percentage of these procedures are only done with local anesthesia. I’m honestly not sure why they decided not to put me under conscious sedation. Unless there are specific medical reasons why to avoid sedation, I think that this should be the decision of the patient, not the physician. Late at night, I frequently lay awake reliving this day.
Delirium and nerve pain kept intensifying, and I mostly just remember begging anyone and everyone for help. Mostly, I just wanted to be put to sleep and would’ve given everything in my bank account to be unconscious. Since my port was removed, the nurses struggled to gain intravenous access. My IVs had to be placed with ultrasound guidance, and even then they would infiltrate quickly. My arms were bruised and swollen. There were bandages in multiple locations from the IV (hands, forearms, upper arms). I hadn’t bathed in about 20 days and I was in pain and itchy.
Gratefully, I responded well to the antibiotics which resolved the infection. However, now my parents and health care team had to fight even harder to organize a hospital-to-hospital transfer to Rhode Island. Everyone seemed worried and wanted to play it safe. Each day we delayed was another day I was on a high dose of ketamine and other powerful drugs.
Although my main medical team is terrific, some of the inpatient physicians treating me were incredibly dismissive or even bullies. For example, one neurosurgeon in the ICU told me that there was no way I would be able to have surgery soon and certainly not be able travel out of state to get it. He wrote in his notes that I was at risk for one or multiple organ failures and had a high death risk. I pleaded with him sobbing for him to reconsider his position/recommendation of my upcoming surgery, but as I was begging him to not reduce my ketamine, he turned around and walked out of the room. His entourage of residents and medical students followed him mechanically like heartless minions.
As you can imagine, I was distraught. He ripped apart any glimmer of hope I had as I lay there helpless. Luckily, Millie was there to witness this interaction and swiftly followed the doctor to give him a piece of her mind. Later that night, my dad talked to this doctor which helped diffuse the situation. I consider myself very blessed to have advocates like this in such vulnerable times.
